Celiac disease

[Guest guest]

just curious......is celiac disease more common in children with ds than

children without ds?

jackie

-------------- Original message --------------

From: " squick08 " <squick08@...>

Hi All! Yesterday I got blood work back from my doctor showing that she

has celiac disease. She has to go and see a pediatric gastron. to

confirm the test results. She was giving prednisone to stop the

swelling in her joints. Thanks to all that helped me.

Sharon Higgins

Mother of Kearsten (4 with DS)

[Guest guest]

_http://www.ds-health.com/celiac.htm_ (http://www.ds-health.com/celiac.htm)

By Dr. Len !!

Jeannette

[Guest guest]

I have really become interested in this the last few days...I havent ever given

it much thought....but I know Ive looked it up before. But now as I see the

symptons you cant help but to look for each one. Those of you who's kids have

Celiac ....did they have symptoms?

celiac disease

Hi All! Yesterday I got blood work back from my doctor showing that she

has celiac disease. She has to go and see a pediatric gastron. to

confirm the test results. She was giving prednisone to stop the

swelling in her joints. Thanks to all that helped me.

Sharon Higgins

Mother of Kearsten (4 with DS)

[Guest guest]

More common in Children with DS. I was told that ever child with ds

should be tested by age 2. ( National DS health care guidelines 1999

revision sheet) Down syndrome quarterly - vol 4 - number 3 sept 1999

Steph

" Truth is not determined by a majority vote. "

-Cardinal ph Ratzinger

http://360./rnscarlson

Re: celiac disease

just curious......is celiac disease more common in children with ds than

children without ds?

jackie

-------------- Original message --------------

From: " squick08 " <squick08 (DOT) <mailto:squick08%40> com>

Hi All! Yesterday I got blood work back from my doctor showing that she

has celiac disease. She has to go and see a pediatric gastron. to

confirm the test results. She was giving prednisone to stop the

swelling in her joints. Thanks to all that helped me.

Sharon Higgins

Mother of Kearsten (4 with DS)

[Guest guest]

In a message dated 6/14/2006 8:05:14 PM Central Standard Time,

linman42@... writes:

>

>

> Hmmm,

> I was told it's common in kids with Diabetes- that's why amanda was checked.

>

> Her endo recommended it. But we are seeing so many kids with DS who have

> celiac.

>

>

>

>

>

>

>

>

What are the symptoms of Celiac Disease?

Stefanie

Texas

[Guest guest]

Helen,

I found this for you. http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

Hope it helps.

Teri

hburger64 <hburger64@...> wrote:

is anyone familar with this? The rheumy wants Nick tested as he has

not grown ( perhaps 2cms) or gained any weight in close to a year.

The rhuemy seems to think that Nicks body is not adsorbing nutrients

from the foods he eats. Nick can be a picky eater when hes not feeling

good, but when hes doing ok he can eat like a horse. The other night

he had 3 peanut and jelly sandwiches with crusts removed ( 6 slices of

bread) 6 breakfast sausages and a handful of raw carrots. 2 hours

later he wanted to know what was for supper as that was only a snack???

I was just wondering of anyone else has been though this or suspected

celiac's disease. I did read that its an autoimmune disease, surprise

surprise!

hugs Helen and (9,systemic)

---------------------------------

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[Guest guest]

--Thanks for the link teri, I'll check it out.

hugs Helen and (9,systemic)

- In , Teri Hepworth <thep115@...> wrote:

>

> Helen,

> I found this for you.

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

> Hope it helps.

> Teri

>

> hburger64 <hburger64@...> wrote:

> is anyone familar with this? The rheumy wants Nick

tested as he has

> not grown ( perhaps 2cms) or gained any weight in close to a year.

>

> The rhuemy seems to think that Nicks body is not adsorbing

nutrients

> from the foods he eats. Nick can be a picky eater when hes not

feeling

> good, but when hes doing ok he can eat like a horse. The other

night

> he had 3 peanut and jelly sandwiches with crusts removed ( 6

slices of

> bread) 6 breakfast sausages and a handful of raw carrots. 2 hours

> later he wanted to know what was for supper as that was only a

snack???

>

> I was just wondering of anyone else has been though this or

suspected

> celiac's disease. I did read that its an autoimmune disease,

surprise

> surprise!

>

> hugs Helen and (9,systemic)

>

>

>

>

>

>

> ---------------------------------

> How low will we go? Check out Messenger's low PC-to-Phone

call rates.

>

>

[Guest guest]

Helen-

Yes, Celiac is a disease in which the body is unable to process gluten,

which is found in many grains, which means it is critical to eliminate all

foods

with gluten from the diet(bread, cereals, etc). When gluten is introduced

to the digestive system, it literally damages the part of the intestines which

retain the nutrients, so as your dr. said, the food passes right through the

system, and nutrients are not absorbed. Celiac is much more widespread than

most people know, and it often has " silent symptoms. "

It has a high occurrence in people with Down syndrome(1 in 20), and those of

Irish, Italian, descent. However, there are a number of gluten-free foods

on the market--one company comes highly recommended from others I know whose

children have celiac---The Gluten-Free Pantry.

It's important that is properly tested (blood test is done first to

check for the antibodies). If antibodies are present, then a biopsy is

done, which is the most definitive test.

Hope this helps, and best wishes to and you, Helen. Please keep us

posted!

Beth Sekelik

[Guest guest]

Helen, one of the women I work with son was diagnosed with diabetes right

before Kindergarten and a couple years later he was diagnosed with Celiac. He is

in 5th grade now. If you have any specific questions I can ask her. Kim in MN

In a message dated 9/6/2006 7:35:27 PM Central Standard Time,

hburger64@... writes:

I don't feel i can change his diet unless I really have to. Nick is

a picky eater and I hate to admit it, his favorite foods include

pancakes, cereal, crusty bread etc. I just cant take them away from

him unless theres a reason. It would be too traumatic. I feel I am

the one that turned into a picky eater ( hes been sick so

much of his life that i would let him eat whatever he felt like at

the time because I was just desparate for him to actually eat

something/anything.

hugs Helen and (9,systemic)

[Guest guest]

There is a very helpful website to use to get started. It is

www.csaceliacs.org

Simler

>>> .D.Letendre@... 09/12/06 2:51 PM >>>

I am seeing a pt tomorrow that has been worked up for celiac disease.

There is no clinical evidence that she has it but she feels better when

she omits gluten from her diet. I am not well versed in gluten-free

diets. Does anyone know of some good reference for myself and that I

could share with my patient?

Thanks in advance for any help.

Dartmouth Hitchcock Medical Center

Section of General Surgery

Lebanon, NH

(603)650-8810

[Guest guest]

I found good information on http://www.gluten.net/

some helpful pdf forms

Marcus, R.D., C.D.N. North Shore-Long Island Jewish Health System Center For Weight Management 410 Lakeville Road Suite 105 New Hyde Park, New York 11042 Phone: (516) 465-5286 Fax: (516) 465-5292 Email: emarcus@...

-----Original Message-----From: [mailto: ]Sent: Tuesday, September 12, 2006 5:51 PM Subject: celiac disease

I am seeing a pt tomorrow that has been worked up for celiac disease. There is no clinical evidence that she has it but she feels better when she omits gluten from her diet. I am not well versed in gluten-free diets. Does anyone know of some good reference for myself and that I could share with my patient?Thanks in advance for any help.Dartmouth Hitchcock Medical CenterSection of General SurgeryLebanon, NH(603)650-8810

[Guest guest]

CSA: celiac sprue association in Lincoln, NE. is great.

Joan

celiac disease

I am seeing a pt tomorrow that has been worked up for celiac disease. There is no clinical evidence that she has it but she feels better when she omits gluten from her diet. I am not well versed in gluten-free diets. Does anyone know of some good reference for myself and that I could share with my patient?Thanks in advance for any help.Dartmouth Hitchcock Medical CenterSection of General SurgeryLebanon, NH(603)650-8810

[Guest guest]

The only thing I can relate to is cystic fibrosis. That is a stretch though as it is uncommon to have both cf and Ds. Of course we won the lotto with Phoebe who has both. Before we knew she had cf her poops were foul, runny and greasy because of malabsorption, and she had a hard time gaining weight. Once we started adding enzymes to her feeding, this got allot better. I also give her a probotic that helps restore the normal flora. I have heard of kids without cf who benefited from enzymes because they had absorbtion issues.

Dinkins-Borkowski; Nolan(4) nocf, Phoebe(2) Ds & Cf

Phoebe's Video: http://www.active.com/donate/buddywalk2006/phight4phoebe

Get Phoebe-Chic: http://www.cafepress.com/phoebesphight

Celiac disease

I have a question about this. My son is 2 and has been having diarrhea type poops for months off and on. I attributed this to his teeth which he got quite frequently. It is once a day and smells horrible and goes out his legs and up his diaper. Well I have been taking him up to Kennedy Kreiger for feeding issues. I was telling them about the runny liquid poops and they want him to have an endoscopy. Does he have to have any other symptoms to have this? He doesn¢t have any other symptoms other than this. He eats fine etc

Thanks!

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[Guest guest]

<<I was telling them about the runnyliquid poops and they want him to have an endoscopy.>>

They should certainly do a blood test first...for anti-endomysial antibodies and anti-gliadin antibodies. I've never heard of wanting to scope for celiac without looking for a blood test marker first.

Sherry

[Guest guest]

Sometimes kids with celiac don't have much of any synptoms. It's one of those things all kids with DS should be screened for.

Typically they do a blood screen first, but maybe they just want to go ahead and get the a biopsy right off?

Did they mention they are doing the endo for the biopsy? Just an endo to go down and look isn't going to tell them much about CD. Will let them know other issues.....ask what the endo is for.

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

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Celiac disease

I have a question about this. My son is 2 and has been having diarrhea type poops for months off and on. I attributed this to his teeth which he got quite frequently. It is once a day and smells horrible and goes out his legs and up his diaper. Well I have been taking him up to Kennedy Kreiger for feeding issues. I was telling them about the runny liquid poops and they want him to have an endoscopy. Does he have to have any other symptoms to have this? He doesn¢t have any other symptoms other than this. He eats fine etc

Thanks!

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[Guest guest]

Ya know this makes me wonder. If cf patients use enzymes to break down the foods for diagestion, and if people who have celiac disease have a hard time digesting wheat...

I wonder if, given enzymes, the people with celiac would be able to digest the wheat products?

The symptoms are similar, so I wonder if it would take the same cure?

Dinkins-Borkowski; Nolan(4) nocf, Phoebe(2) Ds & Cf

Phoebe's Video: http://www.active.com/donate/buddywalk2006/phight4phoebe

Get Phoebe-Chic: http://www.cafepress.com/phoebesphight

[DownSyndromeInfoEx change] Celiac disease

I have a question about this. My son is 2 and has been having diarrhea type poops for months off and on. I attributed this to his teeth which he got quite frequently. It is once a day and smells horrible and goes out his legs and up his diaper. Well I have been taking him up to Kennedy Kreiger for feeding issues. I was telling them about the runny liquid poops and they want him to have an endoscopy. Does he have to have any other symptoms to have this? He doesn¢t have any other symptoms other than this. He eats fine etc

Thanks!

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[Guest guest]

<<I wonder if, given enzymes, the people with celiac would be able to digest the wheat products?>>

Huston enzymes have made products that supposedly help with digesting gluten and casein. There is a list called enzymes and autism on that discusses these. Some folks seem to think they have helped enough after awhile so that they can return to gluten...altho this is a glutenfree diet for autism not celiac. That would be the place to look for info like this. You can probaly google Huston or Houston enzymes and check out the products.

Sherry

[Guest guest]

There are enzymes that are prescription too. Phoebe uses a powdered one called Viokase. She does not have Celiac but does have malabsorption from the cystic fibrosis. Most cf kids are on some form of enzymes prescribed by their doctors. I just wonder if anyone has looked into giving enzymes with celiac or if a study has ever been done. Wouldnt it be great if you could give those kids enzymes and they would not have to be on a special diet anymore?

Dinkins-Borkowski; Nolan(4) nocf, Phoebe(2) Ds & Cf

Phoebe's Video: http://www.active.com/donate/buddywalk2006/phight4phoebe

Get Phoebe-Chic: http://www.cafepress.com/phoebesphight

Re: Celiac disease

<<I wonder if, given enzymes, the people with celiac would be able to digest the wheat products?>>

Huston enzymes have made products that supposedly help with digesting gluten and casein. There is a list called enzymes and autism on that discusses these. Some folks seem to think they have helped enough after awhile so that they can return to gluten...altho this is a glutenfree diet for autism not celiac. That would be the place to look for info like this. You can probaly google Huston or Houston enzymes and check out the products.

Sherry

We won't tell. Get more on shows you hate to love(and love to hate): TV's Guilty Pleasures list.

[Guest guest]

Special vitamins and watching for gluten

free protein products – but other than that it can be easily done

K. Mackie, MS, RD, LDN

Southeast Bariatrics, P.A.

2300-A Randolph Road

Charlotte, NC 28207

(704) 347-4144 x 214

hkennedy@...

www.southeastbariatrics.com

From:

[mailto: ]

On Behalf Of Monika Woolsey

Sent: Thursday, August 02, 2007

11:39 AM

To:

Subject:

Celiac disease

Hello colleagues,

I met with a woman yesterday who is getting ready for lap band

surgery. It appeared from her history that she may have celiac

disease. If this turns out to be the case, how might this influence

treatment planning for her intended surgery and postsurgical care?

Thanks in advance,

Monika M. Woolsey, MS, RD

http://www.afterthediet.com

[Guest guest]

great information! I know that Isabelle has many of the symptoms and I will get the tests done asap. -Hadley (Isabelle, 3 yrs.)Sheryl <taylorsmomma@...> wrote: Hello all! I was reading the digest yesterday and someone mentioned their childwas having stomach issues so they put them on a gluten free diet andit helped. I wanted to post about the conversation I had with therheumy at my daughter's last appointment because I think it might beimportant for the poster (sorry

I can't remember who posted!) andmaybe for others.If your child is having stomach issues, talk to your rheumy aboutgetting them tested for Celiac Disease. It can cause stomach issues,anemia, slow growth, canker sores in the mouth, and a number of othersymptoms. It is an intolerance to gluten and wheat products andrequires a strict gluten-free diet. It causes damage to the intestinesand can keep the body from absorbing nutrients, and eventually canlead to intestinal cancer and other issues related to the damage. Butit can be controlled 100% by diet. Our rheumy suggested DD be tested because of anemia and the fact thatshe isn't gaining weight. She has gained 2 lbs since she was diagnosedat the age of 2 and she is 3.5 now. Although DD doesn't have stomachissues, she wants to rule it out. She told us that they are startingto see more and more cases of kids with both JRA and Celiac. They seemto be more closely

related than they originally believed. We are hoping that DD's lack of stomach issues means she is free ofCeliac and her anemia is due to poor diet (she is a picky kid!) andthat her lack of weight gain is because she is putting all of herenergy into growing up, not out. She grew a full inch in 2 months! Sheis beginning to look more like a little girl, rather than a toddler.But, if it is Celiac, we can get started on the wheat free/gluten freediet, although it will be hard.I encourage you to have your child tested for Celiac if there are anystomach issues or they aren't growing well. I am scared of the resultsof the test (it won't be done until early November so we don't subjecther to more needle pricks than necessary) but know that we will dowhat we have to do to make sure she is healthy. Sheryl, 3.5 (Pauci JRA) & , 11 months

[Guest guest]

Sheryl-

Thanks for posting this important notice from your rheumy regarding them seeing a correlation between JRA and Celiac. This is fascinating. I am the one who mentioned checking into Celiac to one of the parents.

I also want to mention that 20% of the population who have Celiac have NO SYMPTOMS...it is known as "Silent Celiac." This information comes from one of the top GI specialists in our metro area, here in DC/Northern Virginia.

It has a higher prevalence in individuals with Down syndrome (1 in 20) and those with Irish or Italian descent.

Beth Sekelik, Mom to , 6See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Beth, I also live in the DC area! I was going to ask my Ped about testing Isabelle but was wondering if you could give me the name of your GI specialist. Does he/she see children or adults only? I have always suspected that Isabelle had intolerances to Casein and Gluten, but it's possible that she does have Celiac and we just don't know it. She had severe GERD as a baby and lots of problems once she turned one and we added cow's milk to her diet. Bloody stool, eczema, dark circles under eyes although wasn't anemic.....the list goes on... Thanks! -Hadley (Isabelle, 3 yrs., poly)bebase7@... wrote: Sheryl- Thanks for posting this important notice from your rheumy regarding them seeing a correlation between JRA and Celiac. This is fascinating. I am the one who mentioned checking into Celiac to one of the parents. I also want to mention that 20% of the population who have Celiac have NO SYMPTOMS...it is known as "Silent Celiac." This information comes from one of the top GI specialists in our metro area, here in DC/Northern Virginia. It has a higher prevalence in individuals with Down syndrome (1 in 20)

and those with Irish or Italian descent. Beth Sekelik, Mom to , 6 See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hadley-

So you live in the DC area, too, eh? Cool! I saw the age of your little one, 3, with arthritis. God, it just breaks my heart.

Here is the info on the GI specialist. Actually, she is not our specialist. I have only attended her 2 hour seminar on Celiac, but it was soooo thorough and informative, that I would go to her in a heartbeat. I believe she is a Pediatric Gastroenterologist, so she should be able to see your daughter. One of my friends takes her daughter to see Dr. Chao and is very happy with her.

1.Dr. Chao

Gastroenterology Associates of Northern Virginia

Herndon, VA 703-435-5311

Fairfax, VA 703-716-8700

Fairfax, VA 703-698-8960

Here are some other names in case she doesn't work out for you. These names come recommended from members of the parents group I belong to:

2. Dr. Lynn Duffy (same practice as Dr. Chao)

3. Dr. Sirlin

Ashburn, VA

703-726-9298

4. Dr. Agnieszka Pluta

town Univ. Hospital

Pasquerilla Center

202-687-4673

5. Dr. Alessio Fasano

Univ. of land at Baltimore

(no # given)

(Parent says that he is nationally recognized for his work on Celiac).

Hope this info helps you and your daughter!

Best Wishes!

Beth See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

There is definitly a correlation between Celiac Disease and JRA, they are both Autoimmune System diseases. Once a body hosts one autoimmune system disease it opens the door and makes the body more vunerable to ALL of the AIS Diseases. Diabetes is another common one. , my 6 year old daughter, was dx with pauci JRA when she was 3. we were very lucky because she took nyproxen and after a year went into remission. At the age of 6 she was dx with CD. However, since the JRA stopped eating pizza, pasta, sandwich bread and rolls, mac and cheese. Basically, the only gluten she ate was

cookies and cakes. I believe that the gluten free diet has helped 's joint pain. I hope that helps a little to know that it is more common to have both or other AIS Diseases. Suzanne gluten intolerant and (6), pauci and celiac

Catch up on fall's hot new shows on TV. Watch previews, get listings, and more!

[Guest guest]

Sue, I find this very interesting and had no idea that CD was also an auto-immune. That makes a lot of sense that having one could lead to the other. I think that the genetics are there (have a lot of psoriosis in my family) and then the JRA set in due to a trigger of one form or another (several viruses in a row for us). The dairy (Casein) sensitivity was there for a year before the JRA in the case of my daughter. I know that food intolerances don't "cause JRA", but I also know that her symptoms are way better when she isn't eating as much wheat/gluten foods. Also sugary things seem to increase swelling for Isabelle. We have to really limit things which has been hard since she started preschool this fall. I was upset to find out that the first day they had chocolate chip cookies for snack! I find myself turning into one of those neurotic mothers

because for my daughter this means her knees and hips are going to give her hell that night from that snack. I used to bake brownies when ever I could for the kids and now I am becoming a "health freak" LOL! Thanks for the info. I am so glad to find out that I am not just imagining that gluten stirs things up for Isabelle. -HadleySue Wieber <sulw11@...> wrote: There is definitly a correlation between

Celiac Disease and JRA, they are both Autoimmune System diseases. Once a body hosts one autoimmune system disease it opens the door and makes the body more vunerable to ALL of the AIS Diseases. Diabetes is another common one. , my 6 year old daughter, was dx with pauci JRA when she was 3. we were very lucky because she took nyproxen and after a year went into remission. At the age of 6 she was dx with CD. However, since the JRA stopped eating pizza, pasta, sandwich bread and rolls, mac and cheese. Basically, the only gluten she ate was cookies and cakes. I believe that the gluten free diet has helped 's joint pain. I hope that helps a little to know that it is more common to have both or other AIS Diseases. Suzanne gluten intolerant and (6), pauci and

celiac Catch up on fall's hot new shows on TV. Watch previews, get listings, and more!